Plenary Opening Session

Transgender medicine is a relatively new loot to the tribe of medicine. Professional medical organizations, such as the Endocrine Society, have embraced this new loot, as illustrated by the publication of clinical practice guidelines. However, most of the available evidence comes from low-quality studies. Compared to other areas of healthcare, like diabetes, cardiovascular disease and osteoporosis there is  a striking absence of well-developed clinical trials. Most of the evidence is based on expert opinion, case reports and small observational studies. In the past, pioneers in transgender hormonal treatment as Harry Benjamin and Louis Gooren, based their treatment choices on available evidence diverted from studies in hypogonadal men and women. This lack of specific transgender data prompted these pioneers to start clinical research in the realm of transgender treatment. Nowadays, several large cohort studies are ongoing, but clinical trials are still awaited.

In my presentation I will go into possible tensions between personalized health care and clinical research and show how these tensions might be overcome. Furthermore, I will go into new possibilities available with Electronic Health Record and the use of big  data techniques in healthcare. I will argue that sensitive individual care, continuous quality assessment and clinical research have to go  together to meet the medical needs of transgender people.

Background

Due to the COVID-19 pandemic, access to medical care was restricted for nearly all non-acute conditions. Transgender and gender-diverse people are assumed to be affected particularly severely by the restrictions caused by the COVID-19 pandemic. Research shows an over-representation of transgender and gender-diverse people in vulnerable socio-economic situations due to experiences with discrimination. At the same time, a majority of transgender and gender-diverse people depend to a certain extent on specialized transgender-specific health care.

Methods

As an ad hoc collaboration between researchers, clinicians, and 23 community organizations, we developed a web-based survey that was translated into 27 languages. Participants were recruited via community sources, social media channels, and snowball sampling since May 2020. We assessed demographical data, health problems, risk factors, COVID-19 data (e.g., contact history), and the influence of the COVID-19 pandemic on access to transgender health care services.

Results

4333 transgender and gender-diverse people from 43 European and Eurasian countries participated in the study. 41.9% were (trans) man, 33.1 µ% were (trans) woman, 20.7% identified as non-binary. 40% of our participants experienced distress due to their current living situation in the COVID-19 pandemic; 10% even had to change their place of living. 33.5% had suicidal thoughts, 2.9% have attempted suicide since the beginning of the pandemic. 61.6% of our participants reported suffering from at least one acute or chronic condition currently. More than one-third of the participants reported a chronic or acute condition recognized as a risk factor for a severe course of a COVID-19 infection. 21.7% reported that they avoided or are going to avoid COVID-19 related health care due to the fear of discrimination or mistreatment, even in case they would show symptoms of a COVID-19 infection. Access to at least one transgender health care service was restricted for nearly 50% of the participants.

Conclusion

Transgender and gender-diverse people suffer under the severity of the pandemic due to the intersections between their status as a vulnerable social group, their high amount of medical risk factors, and their need for ongoing medical treatment. The COVID-19 pandemic might have potentiated these vulnerabilities, added new challenges for transgender and gender-diverse people, and, therefore, led to devastating consequences, like severe physical or mental health issues, self-harming behavior, and suicidality.

We are seeing a backlash against trans people’s rights in several areas right now. The threat comes from conservative right-wing extremists as well as trans-exclusionary radical feminists. On top of that we are in the midst of a deadly pandemic. All of this has built up and is threatening the right to access gender affirming health care.

In this keynote lecture Jêran and Jorge Maria speak about the necessity of organising for trans rights and what the movement’s goals should be. The focus lies on the needs and wants of young trans people who are marginalized in several ways, as the speakers examine the faults in the health care systems of today. This keynote will start trying to shift focus: from working to contain our rights, to expanding what our rights should be. How we can move from a health care system that only alleviates pain to one where joy and pleasure can be in focus. The Agenda 2030 promise to leave no one behind needs to apply to gender affirming health care as well. We need to get rid of the scarcity mentality once and for all.